Labels, Identity, and Narratives in Children with Primary Speech and Language Impairments

Labels, identity, and narratives in children with primary speech and language impairments

Background

Over time, the labels used for various speech and language impairments change. For example, language impairment in children has been called developmental dysphasia/aphasia, language impairment/ disorder/delay/difficulties(Bishop, 2013). Changes in labels reflect our evolving understanding of the nature of a disorder but also the changing social context and mores. Currently a number of terms are in use for speech and language impairments which may be used differently by practitioners and researchersin education and health contexts. For example, the phrase ‘speech, language, and communication needs’(SLCN) was coined in the UKby the Bercow review to encompass the widest range of these impairments. However the term is used and understood in a variety of ways by different professionals and not used at all by parents(Dockrell, Lindsay, Roulstone, & Law, 2014; Roulstone & Lindsay, 2012). The use of other labels such as specific language impairment or language delay is by no means straightforward as recent debates have illustrated (Bishop, 2014; Reilly et al., 2014).That debate reflected the views of academics, clinicians, educators, and parents (Bishop, 2014; Huneke & Lascelles, 2014; Lauchlan & Boyle, 2014). While professionals debate the best label to describe language impairments, it is evident that language impairments are not well understood in the public domain when compared with other diagnostic categories such as Autism, and ADHD (Kamhi, 2004).

Although views have been expressed on the most appropriate labels to describe children’s language impairments, the voices of children themselves are missing from the debate. Little is known about children’s awareness of labels, their views on the potential positive and negative consequences of these labels, and their preferences in relation to labels. The absent voices of children needs to be considered in the context of Article 12 of the United Nations Convention on the Rights of the Child (UNCRC, 1989) which states that children have the right to express views on all matters affecting their lives, in accordance with their age and maturity. In the UK, the UNCRC has been enshrined in legislation in the Children and Families Act (2014) which places a legal requirement on professionals to take account of children’s views and to involve them in decision-making about the individual support that they receive and in the planning, commissioning, and reviewing of services. Thus the debate about the labels to be used in the field of speech and language impairment should take account of the views of the children and young people themselves. The importance of the child’s perspective on the labelling process becomes more obvious when one takes account of the important role that labels play in identity. Identity provides a sense of belonging and is an important determinant of well-being (Simmons-Mackie, 2004; Whalley Hammel, 2009). Therefore, it is potentially risky to make decisions about which new labels to use without a full understanding of children’s views.

This paper considers the links between labels and identity and examines what has already been found about identity construction in the field of disability and more specifically, regarding children with speech and language impairments. The paper goes on to suggest that one way to gain insight into children’s perspectives on labelling is to examine how they represent themselves to others in their personal narratives. The paper then presents a study of the personal narratives of children with speech and language impairments and considers the findings in terms of the implications for the use of labels and the process of labelling in speech and language pathology.

The process of identity construction has been widely researched and debated primarily in the sociology literature. By way of background we focus on key aspects of this literature and explore its relevance in relation to understanding the relationship between labels and identity construction in children with speech and language impairments. Most basically, a key component of identity construction is that we assign ourselves to and are assigned by others to categories with labels, which represent our belonging in that social group. For example, these identity categories may include gender, child/adult, race, ethnicity, sexual orientation, social class, normal/not normal and disability and, of course, speech and language impairments (Earls & Carlson, 2001; Hatoss, 2012). Clearly we do not assign only one category or label to ourselves or others. We construct multiple identities of who we are and how we want to be known, taking account of how others may try to categorise us (Antelius, 2009). In one context a child may like to be seen as a football fan, in another as a rogue, and another as a caring brother. Furthermore, identity is viewed as a social product that arises through interaction with others (Acton & Hird, 2004). We communicate to others something of ourselves (our identities) through our talk and actions andit is through our social interactions that our identities are affirmed or challenged (Jenkins, 2008).

It is also through social interactions that individuals learn the meanings, roles and behaviours that are associated with labels. People living in a culture know what labels such as ‘normal’, ‘competent’, and ‘disability’ mean in that context, how they are enacted, and the negative attitudes associated with some labels and deviations (Alsaker, Bongaadt, & Josephsson, 2009; Barrow, 2008). For example, in school a child is labelled as a pupil; there are particular expectations and rules in terms of what behaviours are expected for the individual to function in that context. Deviations from those behaviours will be recognised by others and may lead to other labels such as ‘naughty’ or not normal in some way. Children are actively involved in the process of identity construction and the pupil may internalise the labels, albeit reluctantly, and behave accordingly or may reject them. Labels have the potential to be stigmatising because they can preclude an individual from full social acceptance(Goffman, 1963). Children develop their sense of self-concept by accruing labels that they both assign to themselves and are assigned to by others.

The issue of identity and labelling has received considerable attention in the disability field, with some communities taking a very active stance in the use of labels. There is evidence from research with adult populations that identity can be disrupted following acquired brain injury (Gelech & Desjardins, 2010) and aphasia (Arnesveen Bronken, Kirkevold, Martinsen, & Kvigne, 2012). The findings of research on identity with children with disabilities suggests that children may not be passive recipients of disabling discourses, but rather active agents resisting and engaging with these discourses in their lives, with some rejecting identities of tragic, vulnerable, sad, and needy (Connors & Stalker, 2007; Kelly, 2005; McMaugh, 2011). For example, Wickenden (2010)explored identity in young people who were AAC users. She found that they were more concerned about ways in which they were like others rather than different from them and they viewed themselves as teenagers rather than as disabled. Other researchers have also found that children with speech and language impairments present with positive identities and that the impairment represents only one aspect of their multiple identities (Merrick & Roulstone, 2011; Roulstone & Lindsay, 2012). McLeod, Daniel, and Barr (2013), in a study of the public and private worlds of school-aged children with speech sound disorders, interviewed six children, their parents, siblings, a friend, teacher, and a significant other in their lives. They found that when children were in private context with family and close friends the children could be themselves and have normal lives. However, when they were in public contexts, the children experienced altered identities, as well as social challenges. These studies highlight the importance of paying attention to cultural contexts in which children live their lives. Indeed, Tomblin (2009) argues that language disorder can be culturally defined when children do not meet socially-defined expectations. Using this cultural framework approach to defining language disorders ‘...the locus of the disorder in a communication disorder will not be found in the characteristics or behaviour of the individual, but rather in the cultural context’ (Tomblin & Christiansen 2010, p. 40). In this way, communication difficulties may be viewed negatively if a society values communication and this negative evaluation may lead to stigma.

Research on children’s perspectives has focused on children’s experiences of speech and language impairment (McCormack, McLeod, McAllister, & Harrison, 2010; Merrick & Roulstone, 2011)and on aspects of their lives that they value or wish to change(Roulstone & Lindsay, 2012). Findings contribute to our understanding of children’s perspectives on identity. However, a more specific focus on identity could add more directly to the debate on the use of labels in the field of speech-language pathology. One methodology that can be used to investigate identity construction is narrative inquiry.It comes from the view that identities are constituted in ‘storied selves’ in interactions with others (Sarbin, 1986) and that individuals lead storied lives (Clandinin & Connelly, 2000). We make sense of experiences through stories, and our lives can be construed as stories. Therefore, narrative researchers study the kinds of stories narrators put themselves in, the identities that are performed and claimed, how these identities are affirmed or challenged by others, and how these stories connect with wider public narratives (Benwell & Stokoe, 2006).Therefore, in narrative inquiry the phenomena of interest and units of analyses are stories. Another tenet of narrative inquiry is that narratives are viewed as socially-situated interactive performances that are produced for particular settings or contexts, for particular audiences, and for particular purposes (Chase, 2008). Therefore, we make choices in relation to which versions of stories we tell to different people in different contexts and this will be influenced by how we want to be seen by others.

In summary, there is a debate about the labels we use to describe children with speech and language impairments. Little is known about the perspectives of children themselves on labels and ways in which these labels may affect their identity. In this paper, we report on a study on identity that was part of a larger study on the lived experiences of 9-12 year old children with primary speech and language impairments, that is, speech and language impairments in the absence of other developmental disabilities (PSLI). The aim of this study was to explore the range of identities that children with PSLI presented in their narratives and to reflect on the meanings associated with labels. Specific research questions were:

• What is the range of identities which children with PSLI present in their narratives?
• How do children evaluate these identities in their narratives?

Ethical approval

Ethical approval was obtained from [anonymised for peer review].

Methodology

The methodology was narrative inquiry which shares common features with other qualitative traditions. First, narrative inquiry provides insights into people’s experiences of phenomena. Second, there is a focus on the individual because of the assumption that ‘macro’ structures are sustained from ‘micro’ social actions(Damico, Simmons-Mackie, Oelschaeger, Elman, & Armstrong, 1999). For example, we can learn about broader cultural beliefs, values, and practices from people’s stories. Third, the epistemology underpinning narrative inquiry is interpretivist, whereby truth is constructed by different people in different ways, with no objective reality by which participant’s accounts can be judged (Finlay, 2006).Narrative inquiry relies on extended accounts that are preserved and treated analytically as units, rather than fragmented into thematic categories as in other forms of qualitative analysis (Clandinin & Murphy, 2007).

Understandably, researchers may have reservations about using narrative inquiry as a methodology with children with speech and language impairments because of evidence that these children have particular difficulties in relation to narrative competence (Botting, 2002; Norbury & Bishop, 2003). For example, there is evidence that these children may have difficulties with the structureand cohesion of narratives (Pearce, James, & McCormack, 2010). Studies in speech and language pathology research typically focus on narratives produced by a single teller generated using story re-tell with or without pictures and the analysis focuses on macro and microstructures. However, in narrative inquiry, the focus is on the biographical insights that the narrative provides of the teller(Chase, 2005). In this study a conversational approach is used whereby narratives involve multiple, active co-tellers, and the plot lines may not have beginnings, middles and ends because the speakers try to develop the plot across turns (Ochs & Capps, 2001). Labov and Waletzky (1967, p. 28)define a minimal narrative as a sequence of two independent clauses that are temporally ordered and ‘where a change in their order will result in a change in the temporal sequence of the original semantic interpretation’. An example of the first story told by the second author’s two-year old son illustrates a minimal narrative: ‘left book nursery, me cried’.

Furthermore, there is debate in identity research about whether the units of analyses should be ‘big’ life stories or ‘small’ storiese.g. stories about a particular event (Chase, 2008). Although big life stories are common in identity research there is evidence that small stories can also provide useful insights about identity (Bamberg & Georgakopoulou, 2008). In this study we are focusing on small stories for three reasons. First, in daily life we are more likely to tell small stories rather than full life-stories (McLean & Thorne, 2006). Second, while children can access event-specific autobiographic knowledge, some claim that they have not yet developed the cognitive skills to connect single events with each other to tell a full life-story, a skill which emerges in adolescence(Habermas & Bluck, 2000). Third, there is evidence that children’s language difficulties may be less evident in personal narratives in children as compared with those generated using other methods such as story re-tell (McCabe, Bliss, Barra, & Bennett, 2008; Wetherell, Botting, & Conti-Ramsden, 2007). Therefore, we took the view that children with speech and language impairments would be able to tell small stories.

Participants.

A purposive sampling strategy was used to recruit 9-12 year old children with PSLI, with the aim of obtaining variation in the sample (e.g. age, gender, socioeconomic background, children with both speech and language impairments, and experiences of different types of specialist education supports) so that multiple perspectives could be explored. We aimed to recruit 10-12 participants and conduct multiple interviews. This sample size is typical in narrative inquiry studies where researchers aim for depth rather than breadth (Heuchemer & Josephsson, 2006; Infanti, 2008; McNulty, 2003). This age group was selected because some claim that identity becomes more important in middle childhood because children become more concerned about how they are perceived by others (Jenkins, 2008). The aim was to capture a range of experiences rather than profile children across a range of scores on speech and language tests. Therefore, we did not test the children’s speech and language skills because we accepted that they had speech and language impairments if they met the Department of Education and Science eligibility criteria (Department of Education and Science, 2005)for specific speech and language impairment i.e., nonverbal intelligence score above 90 on a psychological assessment and a score of minus 2 standard deviations below the mean on a standardised language test. Socioeconomic background was determined according to whether or not the children were living in areas which were designated as disadvantaged under the Revitalising Areas by Planning, Investment and Development (RAPID) programme (An Pobal, 2012). Speech and language pathologists in one geographic region were requested to distribute information sheets and consent forms to parents of potential participants who met the following inclusion criteria:

• Children aged between 9 and 12 years with PSLI and who met the Department of Education and Science criteria for specific speech and language disorder.
• Children who currently or had attended speech and language therapy and who had received specialist education supports, e.g. resource teaching (i.e. one-to-one teaching for four hours a week in the local school) or placement in a language class (i.e. full-time placement in a specialist language class for a period of one to two years).

See table 1 for a profile of the participants.

Insert table 1 about here

Procedures.

Each participant selected a pseudonym. The first author generated narratives with the participants through semi-structured interviews using a flexible topic guide which was designed following a pilot study (See appendix 1). Narratives were generated using the techniques shown in table 2.

Insert table 2 about here

Parents and children were offered choices in relation to where the interviews would be held e.g.clinics, schools, and the children’s homes (See table 1). Each interview lasted between 45-60 minutes. Interviews were audio-recorded, with assent from the children, on an Olympus Voice Recorder DS-2400. The interviews took place over a six-month period (May to October) so that the researchers could generate data before and after the transition to a different class or school in September. This time period was of interest because of the potential impact on identity constructione.g. when the children moved to or from a specialist setting or moved classes in mainstream where they potentially met new people.